Aljames Posted February 23, 2018 Share Posted February 23, 2018 This may be long, I'll try to condense. Husband had an x Ray and ct in ER Sept 21, 2017. ER Dr saw 1 tumor in right lung, tumor on adrenal gland, enlarged lymph node in para-tracheal area. Family goes bat shi_ crazy, 3 daughters, one is a hospice nurse, one is a trauma medic. So we go to family dr. He orders pet scan. Then biopsy of lung tumor. Pet scan shows only cancer in lung tumor. We go to oncologist. He sends us to big hosp in big city. Dr there orders bronchoscopy on lymph node and biopsy on adrenal tumor. Everything comes back clean. Family breathes again. Just remove lung tumor. They take right lower lobe, tumor, and 10 lymph nodes. This is Nov 27. We are thinking it's all good. Nope. One lymph node is cancerous and tumor was bigger than they thought. This is where things get weird. Our oncologist sees us to plan treatment. He mumbles under his breath, " should be stage 3, but then we wouldn't do surgery," He says chemo once a week, radiation every day, and sends us to radiologist and goes off to have his knee replaced. Radiologist says no, go back and have chemo. Maybe do radiation later. Huh? We go back, and my husband starts chemo. Avastin, Alimta, carboplatin. Once every 3weeks with blood work on intervening weeks. He had his third treatment 2/8 and last is scheduled for 3/1. So there have been some communication issues with the oncologist and his office but the treatment seems fine and most important my husband is comfortable there. He is not a technological guy, no smart phone, no computer. He hasn't googled a single cancer site. And he hasn't seen oncologist since 12/22. So that's my first question...is that normal? To go through chemo and only see nurses? I called the office 2 weeks ago to voice my concern over the lack of a written treatment plan, the fact that they sent us home with neulasta and didn't explain it correctly and was satisfied with the responses. On Sunday (today's Thursday) my husband started having major pain in right abdomen,side and back. He couldn't walk,sit,lay down. He finally let me take him to ER on Monday. He was diagnosed with mild patchy bibasilar infiltrates and right pleural effusion . they prescribed antibiotic and sent him home. He seems to be in less pain. He breathes well, no fever, pulse is fine. He can't laugh, cough or sneeze without pain.He is favoring his right arm and hand. He went for his weekly bloodwork today so I called ahead and told them he'd been to er. When we got to oncologist office they did his blood work and then the Dr came in to the chemo lounge to speak with us. He kind of got in my face about complaining. He said we had gotten a treatment plan (we hadn't) and the radiologist had been on board with the chemo/radiation plan but had changed his mind and oncologist was surprised. Then he said we'd do radiation next. Whoa- we didn't know that. Another lack of communication. I asked about next week's chemo, should we go ahead with it considering the effusion. He hadnt even seen the x Ray or ct done on lungs 3 days ago. He said yes, we'll go ahead, but instead of doing pet scan 2 weeks after last chemo we have to wait 4 weeks. I asked if they'd do an x Ray before the chemo and he said no. He kept saying "this is unique, you shouldn't have surgery with 3b but you did" My daughter is flipping out, she said the ER doctor specific said we needed to keep an eye on the fluid in the pleural area. She hates that the Dr got defensive with me and that he seems so lackadaisical. Does all this seem normal to you all? I'm being pulled by the daughters to do more and the husband who doesn't want to"pis_ the Dr off". We really have no idea how my husband is doing but I sort of thought that was normal while going through the chemo. I wasn't too concerned about the Dr till this pneumonia happened. Now I'm not sure what to think. It does seem that checking by x Ray to see if the fluid has dissipated would be logical but I'm sure they wouldn't do that on a regular, non lung cancer,person. I just want some one to tell me that yes, this is how it works, or no, run away to another Dr fast! To anyone who made it this far,thank you for reading so much! Link to comment Share on other sites More sharing options...
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